Guest guest Posted April 22, 2004 Report Share Posted April 22, 2004 jennifer2 try to get her to locate the speclist in alanta ga... he specilaizes in this disease ... my little girl also had leighs she passed last year in may so i know what she is feeling but it is a poor out come of this paticalar disease and i am sorry to say that but it is ... it sounds like it is not moving rapdily on this child . i know that it usually moves really quick in some children but slower in others...gosh i hate this disease ... you can not really tell any thing you have to watch that is what sucks... if goes from day to day to mint. bye mint.. but i do know that there is a dr. in gerogia that studys nothing but this disease ... he is in the college of alanta ... i hope that helps a little bit .. your friend shannon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2004 Report Share Posted April 22, 2004 Dear , I don’t know if I can be of much help, except to tell you that I am in her exact same situation. My daughter, Samya died of Leigh’d disease (T8993C mutation) in December 10, 2002. My only other child, Leanna will be 7 soon and has the same exact mutation and symptoms and prognosis. I know how she feels. I will tell you, though that Leanna is doing very well so far, but the reality is she may get sick and die very quickly like her sister did in all of 2 months. It is a ver difficult situation. In found out my daughter’s diagnosis only in the last 10 days of her life, and got an official diagnosis the day she died. Up until then I had never ever heard of mito. Only 15 days later, I had Leanna tested and got a confirmation. We were told that we were lucky either have our girls lived past 3 and Leanna is almost 7. We are told to enjoy each day because tomorrow most likely the same will happen. I know the reality and I , too, have felt myself on the verge of a nervous breakdown. Who can blame me, right? As for your friend, it is important for her to know that she is not alone. I know parents who have lost 2 and 3 children to mito. It doesn’t make you feel better, but it helps to find support. She is welcome to e-mail me and I will try my best to offer as much support as I can. The only thing I have found to help me has been my strong faith in Christ, and supportive friends, not always family. I don’t know where she stands in her faith. Another important help for me has been a strong, Loving relationship with a wonderful husband. We know we have each other in the end (hopefully god will give us that, but I guess no guarantee). Together, we manage to survive each day ONE AT A TIME literally. I hoipe your friend finds some support. I don’t blame her, though. It is beyond a nightmare to lose one child, and then know you will lose another. I have asked myself millions of times, “Am I the most unlucky person in the world”. I only have 2 girls, and both have a devastating disease, and both in a severe form. What happened to my 50/50 gamble. I lost both times. It is possible to have 2 sibling severely affected, especially when the genetic mutation is maternally inherited. That is my case. When the mutation is from both parents, at least the chances are less with each child. With maternal inheritance, it is a 50/50chance with each child. My heart goes out to your friend. She can e-mail me privately if she likes. God bless, Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.Samya.org Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 From: JSchwartzo@... Sent: Thursday, April 22, 2004 4:12 PM To: Mito Subject: Leigh's disease Hi all, I am an adult with mito and have been on this site for many years, mostly as a lurker.. My daughter is also suspected to have mito but is only mildly symptomatic thankfully. I am hoping you guys can help me with a friend. Her little girl who just turned 2 was just diagnosed with Leighs. Her brother died from the same disease 3 years ago. Her mom isn't handling it very well which I guess is to be expected. I have e-mailed her the UMDF site and told her about the mito group. I am also looking for people in the Southwest Florida (Sarasota) area who might be able to offer resources. From what I know, Hannah has had several seizures recently and has lost much of her eyesight. She doesn't appear to be doing well although I'm not fully sure of her condition. I know they were looking for some kind of service to help them through this. I was wondering what others in this situation have done. Can you guys give me any advice on how to help the mom? I think she is nearing her breaking point and we want to do anything we can to help but don't really know how. I was shocked to find out it was mito. What are the chances that we would both have this terrible disease with the same complex deficiencies. I guess it may be more common than we think. I would appreciate any help you can give me. 2 Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2004 Report Share Posted April 22, 2004 > > 2, I am not in florida so I cannot help with that, but I can suggest Hospice. I know it is usually linked with dying patients but has been on Hospice for the past year and a half. They are more toward palliative care and up here in Ohio didn't require that 6 month guidleline that they do for adults. They have social workers, nurses, spiritual guidence, repsite and on and on. I would have her ask her doctor about it soon. They really help with everything. I would never have made it through this past yr. with my divorce and all if it wasn't for 's hospice team. has actually become so stable that we are being discharged from Hospice this month. It is such good news but these people have become like part of our family. I hope this helps,and please tell her our prayers are with her. Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2004 Report Share Posted April 22, 2004 I'm sorry I can't offer much in the way of advice as I am not familiar with that area at all. (I'm Canadian, eh...) But, I would like to offer my support. If your friend would like to talk to an other mother who is parenting a child with Leigh's disease, please give her my e-mail address. While mito isn't really all that rare, I have yet to make contact with an other family who is dealing with Leigh's. Donovan and Tarok(20months) > Hi all, > > I am an adult with mito and have been on this site for many years, mostly as > a lurker.. My daughter is also suspected to have mito but is only mildly > symptomatic thankfully. I am hoping you guys can help me with a friend. Her > little girl who just turned 2 was just diagnosed with Leighs. Her brother died > from the same disease 3 years ago. Her mom isn't handling it very well which I > guess is to be expected. I have e-mailed her the UMDF site and told her about > the mito group. I am also looking for people in the Southwest Florida > (Sarasota) area who might be able to offer resources. From what I know, Hannah has > had several seizures recently and has lost much of her eyesight. She doesn't > appear to be doing well although I'm not fully sure of her condition. I know > they were looking for some kind of service to help them through this. I was > wondering what others in this situation have done. Can you guys give me any > advice on how to help the mom? I think she is nearing her breaking point and we > want to do anything we can to help but don't really know how. I was shocked > to find out it was mito. What are the chances that we would both have this > terrible disease with the same complex deficiencies. I guess it may be more > common than we think. I would appreciate any help you can give me. > > 2 Quote Link to comment Share on other sites More sharing options...
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